http://www.cholangiocarcinoma.org/punbb/viewtopic.php?id=121
Thu, 18 Jan 2007 21:15:18 +0000PunBB 1.4.2http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1494#p1494
Hi Kris, They have a liver cancer hospital and one of their Drs. has performed over 500 transplants(Dr. Marsh). He has worked at the Mayo Clinic and various other places They also do laparoscopic resections which is what I was hoping they could do for my husband-just check him out by doing a laproscopic procedure before opening him up completely only to discover that they couldn't finish. My husband has had a lot of radiation and I'm afraid they will be concerned about scar tissue. Actually at Columbus Dr. Bloomston was leary of doing surgery on my husband because he already has had all the radiation he can endure and he was concerned that he wouldn't be able to obtain clear margins and then would not be able to follow through with radiation after surgery.I don't know. I just decided it was time for a second opinion before we started with chemo and Pittsburgh's cancer program is one of the top in the nation. I also felt that they seem to have more options for treatment (I'll let you know after Mon. if this is true) and maybe just more experience in general since liver cancer does seem to be one of their specialties. We may end up back in Columbus but Pittsburgh is actually closer to us. I would check out every option for surgery before starting chemo and radiation. Is your husband's tumor in his ducts or in his liver? Did he have to have stents placed? My husband's tumor is in the bifurcation of his ducts- just a mm. too far into the right duct to resect. Now they don't seem to know whether what they are seeing is tumor or scar tissue. It's all very frustrating! I will let you know what we think of Pittsburgh after our appt. Keep checking things out! There are always options- you just have to figure out the best one and pray that it works! Take care. Mary]]>Thu, 18 Jan 2007 21:15:18 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1494#p1494http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1493#p1493
Mary: I see Oncologist again tomorrow about starting chemo again. This time going to try Xeloda and Oxaliplatin combo. I was going to start a couple weeks ago but had to have a stress test done on my heart which came back neg for any problems. So something is causing premature ventricular beats making it look like my pulse is to low. Could be chemo or pain med related I suppose. My blood level all stayed in the normal range except platelets were at 125 and CA19 was 73. I have actually been feeling quite good and not really looking forward to starting up chemo again; but I'm going to give this different regimen a try. The Oncologist stated he has been having good progress with a couple other patients similar to my case. Hopes things go well at UMPC on Monday. JeffG>]]>Thu, 18 Jan 2007 18:07:51 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1493#p1493http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1490#p1490
Dear Mary, What kinds of things have you heard about UPMC? (I assume that is Pittsburgh??) We are trying to get into MD Anderson to get my husband evaluated since OSU has backed out of doing surgery now. They want to try chemo and radiation first to try and shrink it.

I have heard a few people mention UPMC and was just wondering what kind of reputation they have for livers?

Any info would be appreciated. Thank you.Kris

]]>Thu, 18 Jan 2007 15:47:03 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1490#p1490http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1488#p1488
Jeff, I believe you are right about the odor. I actually noticed an odor from my husband during his radiation treatment and perhaps it was from the cell apoptosis. I don't notice it now- it has been over two months since his brachytherapy but his Alkaline Phosphatase levels jumped sky high after his treatments started and are still high. His other liver enzymes remain high as well.I assume this is all part of the cells dying and now things healing.They say elevated levels can be caused by tissue granulation. Any way, I know at OSU they were doing a lot of radiation on lung cancer patients but I don't know what type of radiation. We are still waiting to hear what is next. It's been over two months since my husband has received any treatments and they don't seem too hot on the idea of surgery at OSU. We are going to the UPMC Liver Cancer Center on Monday. Did you go back on chemo right after your radiation treatment? I worry about him not being on chemo yet but then I think things need to heal before they start zapping him again. Did your liver enzymes jump during or after radiation?]]>Thu, 18 Jan 2007 13:45:17 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1488#p1488http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1487#p1487
4-6 weeks after 3D conformal radiation experiencing odor from sweat glands (not to be gross) but from arm pits. I thought I saw something on site about rad slowing or sttopping liver tumor but couldn't stop the tumors in the lungs. I was wondering if anyone experienced this from chemo or rad and is this possible sign of apoptosis (sp) of cells? Last scan after rad showed tumor shrinkage by 3 cm. and I have no more pain in my liver. Also Has anyone experienced conformal rad to the lungs or is that not heard of? Thanks for any replies. JeffG.]]>Wed, 17 Jan 2007 22:14:06 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1487#p1487http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=1465#p1465
Hello, Lainy,

My husband was diagosed in Oct/Nov 2006 and after liver biopsy, they inserted one drain. It has been most unpleasant for him and had to be painfully replaced on 2 more occasions. Then about 3 weeks ago, Wake Forest put in ANOTHER drain (much better done) in the center of his chest. These drains are sutured in and they shift and it takes a good 2 weeks to heal and discontinue leaking. I often ask myself as I see him flushing with saline if I could or would be able to handle these drains. He's in right now have his drains replaced and here we go with another 2 weeks of healing while he starts 30 days of radiation. They seemed doomed not to work as they are just shifting around in a hole.....sutures break, there's leakage, on and on. They do, however, let him pass bile and his color has improved (jaundice), itching, etc. so I guess they are a good thing.

Just "go with the flow", Lainy (no pun intended) and know that they are a great help to his healing although a bit of a nuisance.

Good luck...............Leslie

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Just when you think you are out of the woods another tree gets in the way! When my husband had his Whipple Surgery last October he ended up with 3 drainage sites. Only one has healed completely. The other 2 seem to heal then open again and we go back to heavy guaze or an ostomy bag. Has anyone had any experience with these lovely drainage sites? The DR told him last week if they don't heal we will look into closing them. Why the long wait and we are curious as to why they just don't close up on their own. Otherwise he is doing just fine. Right on schedule. Thanks.]]>Fri, 05 May 2006 07:06:46 +0000http://www.cholangiocarcinoma.org/punbb/viewtopic.php?pid=468#p468